TORCH 2019

Overview 

Toronto Outcomes Research in Child Health (TORCH) is an inter-disciplinary paediatric collaborative led by scientists and divisional representatives at The Hospital for Sick Children. TORCH facilitates the use of rigorous outcomes in child health research and in bedside care by focusing on the methodology behind the selection, measurement, analysis, benchmarking, and reporting of child health outcomes.

TORCH was founded in 2015 by Dr. Martin Offringa, Senior Scientist in the Child Health Evaluative Sciences (CHES) program. It serves as a local paediatric outcomes platform that advances outcome selection and reporting in paediatric health research and health system evaluation through the networking and collaboration with other established outcome groups and stakeholders in Canada and across the world. Ongoing collaborations with organizations and initiatives include:

  • The Core Outcome Measures in Effectiveness Trials Initiative (COMET) Initiative Patient-Reported Outcomes Measurement Information System (PROMIS)
  • PROQOLID (The Patient-Reported Outcome and Quality of Life Instruments Database)
  • DIRUM (Database of Instruments for Resource Use Management)
  • COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN)
  • CanChild, the research centre dedicated to generating knowledge & transforming lives of children and youth with developmental conditions and their families
  • Cundill Centre for Child and Youth Depression, Centre for Addiction and Mental Health (CAMH)
  • Centre for Brain and Mental Health Outcomes Task Force, The Hospital for Sick Children
  • The International Consortium for Health Outcomes Measurement (ICHOM)

TORCH Vision

To enhance child health by ensuring children are given safe and effective treatments based on evidence that addresses relevant and accurate child health research and health system performance outcomes.

TORCH Mission

To create opportunities to improve paediatric research and health system performance outcomes by

  1. Raising awareness on the importance of meaningful outcome selection, measurement, and reporting in children
  2. Providing methodology to select, measure, and report truthful, discriminative, and feasible outcomes in child health research
  3. Supporting engagement with research ethics boards, funders, journal editors, regulators, and health system administrators to critically appraise outcome selection, measurement, and reporting

TORCH Scope of Activities 2019-2021

  • Raise awareness regarding the importance of selecting and measuring Core Outcome Sets in child health (more information on COMET website: http://www.comet-initiative.org).
  • Ensure methodological research into child health outcomes is high impact by reducing duplication of effort and harmonizing methodologies within fields.
  • Network with existing outcome organizations such as COMET, OMERACT, PROMIS, DIRUM, COSMIN, and ICHOM (see above).
  • Improve clinical trial outcome reporting by generating CONSORT and SPIRIT InsPECT Extensions (see below).
  • Develop and evaluate methodology to identify child and family specific needs in selecting and measuring outcomes in children to:
    • Develop Core Outcome Sets for a range of paediatric diseases.
    • Select and evaluate appropriate outcome measurement instruments for these sets.
  • Translate new insights to research and health system evaluation practice in collaboration with stakeholders, including research ethics boards, funders, regulators, journal editors, governments, and health system administrators.
  • Promote uptake and use of Core Outcome Set selection and measurement methodology in paediatric clinical trials and health system evaluation.

Current TORCH Projects 

  • Core Outcome Set Development 

Core Outcome Sets represent the minimum outcomes that should be measured and reported in all clinical trials of a specific health condition, and are also suitable for use in clinical audit or research other than randomised trials. The development and implementation of a Core Outcome Set makes it easier for trial results to be compared, contrasted and combined, ultimately improving patient and health system outcomes and reducing research waste.

We are currently developing Core Outcome Sets in a variety of paediatric disease areas. Examples include neonatal opioid abstinence syndrome (Kelly et al. 2016), children with feeding tubes and neurological impairment (Kapadia et al. 2016), paediatric appendicitis (Hall et al. 2015, Knaapen et al, 2019), adolescent depression (Butcher et al.; Monsour et al. 2019), and rare metabolic diseases (Potter et al., 2019).

  • Improving outcome reporting in clinical trial reports and protocols: Instrument for reporting Planned Endpoints in Clinical Trials (InsPECT)

Inadequate outcome reporting in clinical trials is a well-documented problem that impedes the ability of researchers to evaluate, replicate, and build upon study findings, which in turn impacts evidence-based clinical and policy decision making. To facilitate harmonized reporting of outcomes in published trial protocols and reports, the Hospital for Sick Children is leading the development of a new reporting standard, the Instrument for reporting of Planned Endpoints in Clinical Trials (InsPECT; Butcher et al. 2019a,b). The final product will provide unique InsPECT Extensions to the SPIRIT (Standard Protocol Items: Recommendations for Interventional Trials) and CONSORT (Consolidated Standards of Reporting Trials) reporting guidelines. Through the development of this tool, we are also assessing the current standard of outcome reporting in published clinical trials, e.g. in adolescent depression (collaboration with the Cundill Centre at CAMH) and neurodevelopmental outcomes in children born extremely preterm (collaboration with Dr. Gregory Moore at the Ottawa Hospital Research Institute).

InsPECT will provide the first evidence-informed and consensus-based standards focused on outcome reporting in clinical trials that can be applied across diverse disease areas, populations, and outcome types. InsPECT has the potential to benefit trialists, systematic reviewers, journal editors, medical writers, and patient groups. For more information, visit https://www.inspect-statement.org/ and follow along our progress @InsPECT2019 on Twitter.

  • ICHOM Overall Paediatric Standard Set 

The International Consortium for Health Outcomes Measurement (ICHOM) is a non-profit international organization that promotes the standardized measurement and reporting of value-based outcomes across health systems. ICHOM develops Standard Sets using outcomes and outcome definitions that matter most to patients. ICHOM also drives the adoption of these Sets across global healthcare settings post-development.

In May 2019, ICHOM will launch the long awaited set for Overall Paediatric Health. The Overall Paediatric Health Global Standard Set should enable value-based standardized outcome measurement in routine clinical practice worldwide, applied to all children, regardless of health condition. This should allow for improved decision making between providers and patients, facilitate quality improvement, reduce hospital costs, and allow for benchmarking across organizations.

Stakeholders from the Hospital for Sick Children are involved with the development process. The TORCH platform is the liaison between ICHOM and the SickKids community during and after this process, with TORCH members as active members of the ICHOM Working Group..

Contact 

Please email martin.offringa@sickkids.ca if you are interested in learning more or becoming involved with any of these initiatives.

References

Updated January 2019